Menstruation and Pancreatitis
Posted , 12 users are following.
Hi everyone, please bear with me as this may be a long post, but I want to go from start to finish so my input is thorough.
My name is Amy, I'm 32 and I suffer with acute pancreatitis on a monthly basis - as the pancreatitis goes away and can sometimes lie dormant, it is not classed as chronic.
My pancreatitis ALWAYS coincides with a drop in oestrogen, whether that be before my period or just after ovulation when we as women have our first drop. I manage my illness at home with morphine and codeine and have had many, many bouts of this now that it is pretty much normal life for me. Pancreatitis used to frighten me but it no longer gives me that fear. Some bouts are horrendously painful, as most of you will probably understand, some pass with only mild pain relief needed - I can't call how bad a bout is going to be until it happens. Some months I won't get it and I can go a few months without, but without fail, when I do get it, it's always around the oestrogen and hormonal fluctuation, without fail.
However, my story doesn't start and end there...
I first had pancreatitis aged 27; I'd had a baby 3 weeks prior to this attack. The pancreatitis was extremely severe necrotising pancreatitis, with my amylase level hitting upwards of 4,500 and my CRP hitting around 500 (if I remember rightly). I was extremely poorly and also suffered from a pulmonary embolism due to this attack. It was thought that 40% of my pancreas had died and I had 2x CT scans within a week. The last CT scan showed my pancreas hadn't died but I was left with a cyst of fluid at the head. I wasn't told about the cyst of fluid until WEEKS later, and only when I pressed. The hospital I was in discharged me with the notion that it was 'just one of those things', despite me asking multiple times if it could have happened because I've just had a baby. No was always my answer.
5 weeks later and I was back in with another flare up, a lower amylase level of around 1200 this time. A short stay of around 3/4 nights, another CT scan and an MRI, where I was then told I had a cyst that hadn't changed since my last admission and I would be referred to a specialist unit to have this cyst drained. I was menstruating at this point.
2 weeks later I turned yellow.
2 weeks after that I had an endoscopic ultrasound to decide the best course of action to get rid of this cyst that was causing my jaundice, and a week after that I was diagnosed with stage 3 pancreatic cancer at age 27. I don't want this bit of information to frighten anyone on here - my case is extremely, extremely rare and after recalling all of my notes, its nigh on certain that my cancer was caused due to the cyst being left untreated and me undergoing multiple CT scans in a short amount of time on a body that was post partum - it looks like the radium turned the cyst cancerous after such a serious bout of initial pancreatitis. My cancer was very much a cause and effect kind of deal and in a way, it makes me lucky that I can make that correlation.
Since then, I've had 22 sessions of chemotherapy and a Whipples Procedure. I am completely cancer free with absolutely no evidence of disease 4 years on and completely and perfectly normal blood results in terms of liver markers, FBC, CA19-9 cancer marker and everything else. Very grateful.
However, I still get pancreatitis due to my hormones and after being under such a specialised team for a long time, who are absolutely phenomenal at what they do, it has surprised me that little is known about the link between hormones and pancreatitis. When I had my first flare up post whipples, I had finished my chemotherapy and we worried that it may be a sign of reoccurrence. I had an MRI scan, full blood screen - all perfectly normal and my surgery was perfectly in tact! I was also menstruating with this flare up.
When I met my oncologist, who is a professor in Pancreatic Cancer and disease, he did indeed tell me that having pancreatitis when you are postpartum is a phenomenon that happens and is more common than we think. When I mentioned the correlation of my mensturation cycle seeming to fall in with my pancreatitis, he said he would do some research for me. He spoke to his colleague in Germany who confirmed it is definitely something they have noticed as the pancreas is oestrogen respondent, and he'd actually written a paper on it.
Since all of this craziness of the last 4 years, I've met a couple of women who also had postpartum pancreatitis, but only ever read a few stories of women who have had it in correlation to menstruation and seen a few notes on NICE paperwork.
So, my question after that long winded post is this - do any women notice that their flares coincide with certain fluctuations of the menstrual cycle? I would be interested in hearing your stories as in the future, I would like to put some literature together on this as I think it's incredibly important for women dealing with pancreatitis moving forward, as well as important to inform health professionals in a manner that is more than just ambiguous.
If you made it this far - thanks for reading!
Amy
0 likes, 12 replies
bria51224 amybelle88
Posted
wow! what a journey to embrace, especially as a new mother! You certainly have quite the story to share.
I had my first bout of SAP 11 years ago. The only time I have ever had issues since then is during pregnancies and right before my cycle. I've thankfully not had another bout as severe as that one time but have had minor flares since. I do believe hormones are a factor for me as well as genetics. (CFTR gene and possibly PRSS1) I am hoping once I have insurance I can get a GI to rule in or out CP vis an EUS as CT has not picked anything up.
Faith55 amybelle88
Posted
I had a bout of random pancreatitis after a colonoscopy. I had been to OB for ovarian and left side pain. I am prone to cysts. Anyway, I have repeat pancreatitis for no reason. I have noticed that I have flare ups during what would be my period as I have had an ablation . I had a procedure to widen the pancreatic duct, but it did not stop anything. I have been reading about pancreatic endometriosis and found your story. I asked my OB about this and he had never heard of such. I am having a hysterectomy in December, but if it is hormone related, I may not get relief as I am keeping at least one ovary. When I have cramps, I also have nausea, stomach pain and pancreas pain. I don't even get my lipase and adipase checked anymore as I know the result. I have no idea what to do, but live with it.
joane64740 amybelle88
Posted
hi, i was diagnosed with CP at 21 when they found my pancreatic duct was full of stones. I turned 50 this year and so have lived with this for over 30 years before and after diagnosis. I can say 100% that some of my flare ups are definitely hormone related. since June this year I have been in hospital 3 times- 2 of them were days before my period started. cant wait for menopause!!
andrea64883 amybelle88
Posted
Hi I just came across this and wanted to respond. Sorry this might be rambling post. firstly i wanted to say to Amy how inspirational you are.
My story is nothing in comparison. Here goes, I've not been diagnosed with pancreatitis (yet) but i had a baby 7 months ago after several rounds of ivf and being pumped with hormones. (i dont regret it one bit as i now have my adorable baby. During the pregnancy I was quite well , i had the ususl 1st trimester morning sickness but even that was mild, i did have really bad heartburn (common) and was getting pains in my ribs and back on the left side (back ache common) but looking back now some of the other pains were odd but it was my 1st pregnancy. I did not not put on hardly any extra baby weight at the tome to my delight but not so now. i also developed a swelling in my neck, on the left side above the collarbone, had an ultrasound on this which was clear.
Baby was born and we were ecstatic, i was so excited to finally have my miracle but i can honestly say i have never felt like the old me ever since.
over the last 7months i hebe developed the following
my gp thinks i have anxiety but reluctantly referred me to GI consultant. i had standard abdominal CT and he said pancreas was all clear and the only thing they saw were some tiny cysts on my liver that were of no concern. he told me my backache was muscular ans to go have chocolate cake o celebrate good results! I pushed for further tests and he is now doing endoscopy to test for celiac, its not eus so wont get details on pancreas.
I have been doing lots of reading to educate myself on pancreas issues but i wont lie, i'm now really concerned as lots if the stories don't offer much hope. I have also emailed GI to say im advocating for myself and if gr want to do endoscopy why bot make it EUS so he can test for celiac and get better view of my pancreas at same time.
so there is my rambling. I do think the pregnancy triggered my symptoms as ive never had any gastro issues before. i cant fully answer your question on menstruation but will monitor this and keep you posted.
Can i ask, has this taken over your life completely or do you manage to crack on around the flare ups. My partner and i are super active(were) always camping and hiking we even did everest base camp but the stories i read have made it seem like life will change dramatically.
andrea64883 amybelle88
Posted
Hi I just came across this and wanted to respond. Sorry this might be rambling post. firstly i wanted to say to Amy how inspirational you are.
My story is nothing in comparison. Here goes, I've not been diagnosed with pancreatitis (yet) but i had a baby 7 months ago after several rounds of ivf and being pumped with hormones. (i dont regret it one bit as i now have my adorable baby. During the pregnancy I was quite well , i had the ususl 1st trimester morning sickness but even that was mild, i did have really bad heartburn (common) and was getting pains in my ribs and back on the left side (back ache common) but looking back now some of the other pains were odd but it was my 1st pregnancy. I did not not put on hardly any extra baby weight at the tome to my delight but not so now. i also developed a swelling in my neck, on the left side above the collarbone, had an ultrasound on this which was clear.
Baby was born and we were ecstatic, i was so excited to finally have my miracle but i can honestly say i have never felt like the old me ever since.
over the last 7months i hebe developed the following
my gp thinks i have anxiety but reluctantly referred me to GI consultant. i had standard abdominal CT and he said pancreas was all clear and the only thing they saw were some tiny cysts on my liver that were of no concern. he told me my backache was muscular ans to go have chocolate cake o celebrate good results! I pushed for further tests and he is now doing endoscopy to test for celiac, its not eus so wont get details on pancreas.
I have been doing lots of reading to educate myself on pancreas issues but i wont lie, i'm now really concerned as lots if the stories don't offer much hope. I have also emailed GI to say im advocating for myself and if gr want to do endoscopy why bot make it EUS so he can test for celiac and get better view of my pancreas at same time.
so there is my rambling. I do think the pregnancy triggered my symptoms as ive never had any gastro issues before. i cant fully answer your question on menstruation but will monitor this and keep you posted.
Can i ask, has this taken over your life completely or do you manage to crack on around the flare ups. My partner and i are super active(were) always camping and hiking we even did everest base camp but the stories i read have made it seem like life will change dramatically.
Sobia111 amybelle88
Posted
searched for months looking for research papers around this exact thing. I have found that I have a pancreatic attack around the time of ovulation.
I first made the link between estrogen levels and pancreatitis when I started HRT. I informed a consultant at the time who agreed with me and I stopped taking them. However, this made no difference to my attacks and after logging my symptoms, food, and periods I have found that I definitely get an attack around two weeks after my period. I too have a cyst on the tail of my pancreas and after reading your article I'm not in a rush to be having a CT. Where was your cyst and what size was it?
More research is definitely needed around this, but thankyou for sharing your story.
AmyNicole amybelle88
Posted
Amy, thank you for sharing your story. You are a true inspiration.
I, too, have been quite poor and without insurance. I've been dealing with symptoms for 20 years. But I've never been officially diagnosed. It's clear that something is wrong, however.
Would you be willing to describe the pain you experience (location) and other symptoms? I've never had a name for what goes on with me. Due to financial constrains, I exhausted the testing that I could access. My "attacks" don't occur every month. But when they do, they always occur in the week preceding my period.
The pain is excruciating. It is right behind the lowest point of the sternum. I describe it as someone inserting a hot poker just under my sternum and an elephant standing on top of that point. (No, it's not very medicalease. 1😊)
I was hoping to see if some of my symptoms match up with yours. Not one doctor has ever even mentioned the need to rule out pancreatitis. But when I came upon your post, I did some further reading, and it seems like a distinct possibility. The only other potential diagnosis that I've ever been able to cobble together is endometriosis that migrated to the outer esophagus. But it's exceedingly rare, and I think you are onto something. Your story and plan to educate physicians may very well save many women from years of debilitating pain. At the very least, we'd have validation and a diagnosis.
Thank you again for your post. Wishing you much love and happiness, a long and healthy life, and much success.
Amy
Tickingtimebomb amybelle88
Edited
LITERALLY ROUND THE CORNER FROM MY PERIOD. So glad to hear this from someone else. I have to give you big big credit - you've been through hell. Wow. You're so brave and courageous for telling your story too. Prayers going out to you...
My first acute attack was April 7th, day 2 of my period. I gotta confess.. I had a 2nd one on April 17th which may line up with ovulation (unsure if contradictory) then may 5th...one day before my period was my long awaited diagnosis of gallstone pancreatitis. Right now I'm about to start my period and have had back pain but it's quite high up and feels more muscular. I got my gallbladder out on May 13th but feel as though I've had pancreatitis previously as the pain is memorable since 2020 but I was always diagnosed with Gastritis.
This terrifies me. I dunno if I can do it
jordin30341 amybelle88
Posted
Hi Amy!
Im so sorry you went through this! Such an inspirational story!
Im currently 26, and just had my first pancreatitis attack due to 'alcohol'. I wasnt much of a drinker, but they said thats what caused it. They also found a pseudocyst on my pancreas but didnt spare to tell me the details while i was in the hospital for a week. This somewhat frightens me now because i was in the process of trying to start a family. Now the way my pancreas has been, im nervous to do so. They want to keep sending me in for ultrasounds to keep an eye on my cyst; do you have any advice on what i should ask the doctors during this time? Or what i should keep looking out for?
kimberly72399 amybelle88
Posted
I just had my first case of acute pancreatitis 3 wks ago. I have had pain in that area b4, starting a few yrs ago, but nothing like this! I was living in a different state then, and was b4 covid, and was never looked into more by a GI specialist. I thought I was pregnant by the sympathy I was having. Well, it happened randomly until the real pain episode recently! I ended up in the hospital for several days. I woke up on day 2 of my period. thought the pain and cramps was from that. until it shot up high, and radiated around to my back!! I knew something was wrong then for sure and went in. I found your blog bc I have been researching, bc I have been wondering if there is a correlation with hormones and menstrual cycles. I am on my cycle again now, just started, and I have been careful not to drink, if at all, bc the docs wanted to blame this on drinking when in fact, I had just gone through bad bad stress with life, and diet due to the stress and temp living situations. I believe it was the combination, as well as my hormones!!! I am 39, and period is different now, and I have noticed the last day or so, some very mild discomfort or pain in the upper abdominal area. maybe I am just over aware or worried it's going to happen again, or it is actually correlating to my menstrual cycles! possibly always was, just didn't have bout of pancreatitis until now when other life factors helped the flare up!
EdDD15 amybelle88
Posted
wow! I've been thinking I was going crazy or as most say it was just my mind. but what you mention is what has been happening to me for a long time now. Since when I was pregnant with my last baby I noticed that I started to feel back pain in the spot I still feel pain till today. Started when he was getting big , like ending of second trimester and onwards. I thought it was because he was pressing up on my stomach. But after he was born it lessened. So I thought it was just the pregnancy. years passed and I seemed to have got used to the pain.
Then around 2010 I started to feel an ever increasing pain till about 2015 I just couldn't bear it and started to vomit and couldn't use the bathroom without issues. Stopped doing the things I loved doing the most which is farming and beekeeping. In my country we don't go for little aches and pains so I didn't know it was pancreas trouble. took herbs and started to feel a bit better and started to gain back some weight. the pain didn't go away only subsided some so a friend urged me to go see a doctor. Finally, I gave in (even if I was more terrified of our hospitals) lol. As I was already starting to feel a lump in my stomach where my pancreas is. got a Ultrasound in 2018 and found out it was a Pancreatic Cyst.
Was hospitalized as an emergency and surgery followed soon after.
I thought I should be well by now. But like you, every cycle either for ovulation or period.. I sometimes get the pain in my pancreas. We can't afford to see specialist like in other countries so I've never checked up with a professional.
I've talked to friends who know a bit about medical issues and they said pancreas isn't related to or are problems triggered by menstrual cycle or hormons . So coming across this post of another person having the same issues and experience really catched my notice! Its not just a year or two but years so it cant be overlooked or you cant just ignore the state of health one feels over time to not link it to certain times of the month when it comes to us ladies. There is much yet to learn about the human body. Even with the advancement of science.
Edna
kleopatra03609 amybelle88
Posted
Hi amybelle, im also 32 and have pancreatitis once a month after ovulation... i dont know what to do 😦 i live in germany, do you maybe know the name of the doctor in germany?